Bayefsky and Berkman argue in favor of evidence-based policy development for expanded prenatal genetic testing. They propose to identify what kinds of information pregnant persons, their par...

Abusive practices in elite women’s artistic gymnastics have been the focus of discussions about how to eliminate or reduce them. Both coaches and parents have been named as key actors in bringing about change. Our focus is on parents and their ability to safeguard their daughters in WAG. Parents are not independent actors, however, but are part of a larger web consisting of an entanglement of emotions and technologies and rationalities used by staff, other parents, and athletes, bounded by skill (...) development plans and by coaching expertise and authority. This entanglement may limit the ability of parents to bring about change. We draw on a Deleuzian notion of assemblage, Foucauldian concepts of discourse and governmentality and Ahmed’s assertion about the entanglement of discourses and emotions to explore how parents are disciplined into accepting dominant discursive practices of sport clubs for elite athletes. The data were drawn from a project called the Parental Awareness Program that was designed to make parents aware of practices in competitive WAG that may not be in their child’s best interest. Participants were parents of young gymnasts who had been identified as “talented” and who were members of an elite gymnastics club. The data analysis was based on focus group discussions with a total of 22 parents and semi-structured interviews with 8 parents. The results suggested that although parents problematized many practices during PAP, processes of governmentality involving an assemblage of discourses about coaching expertise, families, talent, enjoyment, long term skill development plans and its associated time demands, together ensured parental consent for dominant practices. The data suggested that a reduction of abusive practices lies in part in critical examinations of skill development plans that are presented as regimes of truth and are kept in place by emotions and the authority accorded to coaching expertise. These processes curtail parents in their ability to safeguard what is in the best pedagogical interest of their daughter. (shrink)

Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

This paper addresses the ethical issues of secondary uses of samples collected for identification purposes following mass disasters. It studies norms governing secondary use of samples , ultimately concluding that limited secondary research uses of these samples should be permissible.

The prelims comprise: Introduction Definitions Informed Consent Waiver of Consent Reporting of Research Results to Subjects Considerations of Potential Harms to Others Publication and Dissemination of Research Results Professional Education and Responsibilities Conclusion Notes.

Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.

Examines how violence has been conceptually and rhetorically put to use in continental social theory.

_Examines how violence has been conceptually and rhetorically put to use in continental social theory._.

There are countless circumstances under which random individuals COULD act together to prevent something morally bad from happening or to remedy a morally bad situation. But when OUGHT individuals to act together in order to bring about a morally important outcome? Building on Philip Pettit’s and David Schweikard’s account of joint action, I will put forward the notion of joint duties: duties to perform an action together that individuals in so-called random or unstructured groups can jointly hold. I will show (...) how this account of joint duties is preferable to one which defends individual duties to cooperate. I then discuss the limits of joint duties and the ways in which one can fail to comply with them. It will become apparent that the circumstances under which individuals in random collectives acquire such joint duties are rare. (shrink)

Why equality cannot be conditional on a shared human “nature” but has to be for all For centuries, ringing declarations about all men being created equal appealed to a shared human nature as the reason to consider ourselves equals. But appeals to natural equality invited gradations of natural difference, and the ambiguity at the heart of “nature” enabled generations to write of people as equal by nature while barely noticing the exclusion of those marked as inferior by their gender, race, (...) or class. Despite what we commonly tell ourselves, these exclusions and gradations continue today. In Unconditional Equals, political philosopher Anne Phillips challenges attempts to justify equality by reference to a shared human nature, arguing that justification turns into conditions and ends up as exclusion. Rejecting the logic of justification, she calls instead for a genuinely unconditional equality. Drawing on political, feminist, and postcolonial theory, Unconditional Equals argues that we should understand equality not as something grounded in shared characteristics but as something people enact when they refuse to be considered inferiors. At a time when the supposedly shared belief in human equality is so patently not shared, the book makes a powerful case for seeing equality as a commitment we make to ourselves and others, and a claim we make on others when they deny us our status as equals. (shrink)

People hold wildly opposing and very strong views on the question whether mental disorders are brain disorders, and the disagreement is primarily a conceptual one, not one about whether there are,...

Analytic metaphysics has recently discovered biology as a means of grounding metaphysical theories. This has resulted in long-standing metaphysical puzzles, such as the problems of personal identity and material constitution, being increasingly addressed by appeal to a biological understanding of identity. This development within metaphysics is in significant tension with the growing tendency amongst philosophers of biology to regard biological identity as a deep puzzle in its own right, especially following recent advances in our understanding of symbiosis, the evolution of (...) multi-cellular organisms and the inherently dynamical character of living systems. Moreover, and building on these biological insights, the broadly substance ontological framework of metaphysical theories of biological identity appears problematic to a growing number of philosophers of biology who invoke process ontology instead. This volume addresses this tension, exploring to what extent it can be dissolved. For this purpose, the volume presents the first selection of essays exclusively focused on biological identity and written by experts in metaphysics, the philosophy of biology and biology. The resulting cross-disciplinary dialogue paves the way for a convincing account of biological identity that is both metaphysically constructive and scientifically informed, and will be of interest to metaphysicians, philosophers of biology and theoretical biologists. (shrink)

The standard view of ignorance is that it consists in the mere lack of knowledge or true belief. Duncan Pritchard has recently argued, against the standard view, that ignorance is the lack of knowledge/true belief that is due to an improper inquiry. I shall call, Pritchard’s alternative account the Normative Account. The purpose of this article is to strengthen the Normative Account by providing an independent vargument supporting it.

It is commonly accepted – not only in the philosophical literature but also in daily life – that ignorance is a failure of some sort. As a result, a desideratum of any ontological account of ignorance is that it must be able to explain why there is something wrong with being ignorant of a true proposition. This article shows two things. First, two influential accounts of ignorance – the Knowledge Account and the True Belief Account – do not satisfy this (...) requirement. They fail to provide a satisfying normative account of the badness of ignorance. Second, this article suggests an alternative explanation of what makes ignorance a bad cognitive state. In a nutshell, ignorance is bad because it is the manifestation of a vice, namely, of what Cassam calls “epistemic insouciance”. (shrink)

This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...) the affected participant, and communicating the finding. Re-identification requires researchers to break the code in place to protect participant identities. Coding systems replace personal identifiers with a numerical code. Double coding systems provide added privacy protection by separating research data from personal identifying data with a third "linkage" database. A trusted and independent intermediary, the "keyholder", controls access to this linkage database. (shrink)

Volume 19, Issue 5, May 2019, Page 36-38.

"Deleuze plonge la critique kantienne transcendantale dans le bain dissolvant d'un empirisme renouvelé. Ce livre se propose de restituer cette entreprise, et d'analyser l'étonnante création de ce concept, que Deleuze mène depuis ses premières monographies jusqu'à Différence et Répétition dans un dialogue fécond avec l'histoire de la philosophie. Par quelles opérations de distorsion et de collage, Deleuze compose-t-il l'empirisme de Hume, la théorie du signe comme force de Nietzsche, le virtuel et les multiplicités de Bergson, les modes de Spinoza, les (...) individualisations impersonnelles de Simondon pour renouveler la théorie kantienne du transcendantal? C'est tout l'objet de cette enquête, qui permet d'entrer dans le laboratoire du penseur, pour saisir la philosophie se faisant, mais qui permet également d'expliquer l'insistance du transcendantal dans toute son oeuvre"--P. [4] of cover. (shrink)

Prison work creates ethical challenges for which a training program was initiated for Dutch prison staff to foster their Moral Craftsmanship (MCS). The concept of MCS is not yet defined and operationalized in literature. This explorative study aims to 1) define MCS, 2) identify conceptual elements of MCS, and 3) develop a measurement tool for MCS. A document and literature study provided input for the definition and selection of conceptual elements related within DCIA policy documents, identifying three conceptual levels of (...) MCS: individual (cognition, attitude, and actions), team, and leadership. This first MCSQ consists of seventy-one items distributed across the domains: values and norms, judgment and reasoning, consultation, implementation, looking back, interactions, and leadership. We tested its usability via ‘think-aloud interviews.’ Validation of the current version of the MCS-Questionnaire and consensus among experts about what to include or exclude in the concept of MCS are needed for further development. (shrink)

This Element has two aims. The first is to discuss arguments philosophers have made about the difference God's existence might make to questions of general interest in metaethics. The second is to argue that it is a mistake to think we can get very far in answering these questions by assuming a thin conception of God, and to suggest that exploring the implications of thick theisms for metaethics would be more fruitful.

Our moral obligations can sometimes be collective in nature: They can jointly attach to two or more agents in that neither agent has that obligation on their own, but they – in some sense – share it or have it in common. In order for two or more agents to jointly hold an obligation to address some joint necessity problem they must have joint ability to address that problem. Joint ability is highly context-dependent and particularly sensitive to shared (or even (...) common) beliefs. As such, joint ability can be deliberately generated in a given collection of agents by providing information related to collective goals and contributory actions. As moral agents, we regularly face problems wherein the outcome of our actions depends on how others choose. There are two ways of deliberating about our own choices in such cases. We can either think of our choices as best responses to others’ choices (I-mode reasoning). Or we can think of our own choices as contributions to the collectively best option (even when we do not know how others are (likely) to choose) (we-mode reasoning). In deliberating about the right (individual) course of action vis-à-vis collective action problems, agents regularly we-frame the case at hand, that is, they include options in their deliberation that are only collectively available, and they we-reason with regard to their individual contributory actions. It is a necessary condition for collective obligations that potential collaborators facing a joint necessity case have grounds to privilege we-reasoning over reasoning in I-mode. (shrink)

Open science has recently gained traction as establishment institutions have come on-side and thrown their weight behind the movement and initiatives aimed at creation of information commons. At the same time, the movement's traditional insistence on unrestricted dissemination and reuse of all information of scientific value has been challenged by the movement to strengthen protection of personal data. This article assesses tensions between open science and data protection, with a focus on the GDPR.

The most remarkable about the continuity in Chomsky's thought about language is that it takes place against a theoretical landscape in constant flux, the landscape of generative grammar. Chomsky introduced a central distinction between E‐languages and I‐language, the internalized knowledge of language that each speaker has and which is the result of the interaction between his or her language faculty and the (limited) experience that he or she had of his or her mother tongue during language acquisition. The Faculty of (...) Language narrowly understood corresponds to “the abstract linguistic computational system alone, independent of the other systems with which it interacts”. This chapter aims to follow the trail of Chomsky's strongly reiterated claim throughout the years that language is not primarily a tool for communication, but rather, a tool for thought. (shrink)

The traditional concept of prime matter – a purely potential substratum that persists through substantial change and serves to constitute the generated substance – has played a dwindling part in Aristotelian scholarship over the centuries. In medieval interpretations of Aristotle, prime matter was thought to play these two roles in all substantial changes, not only in changes at the level of the four elements. In more recent centuries, traditional prime matter was relegated only to the context of substantial changes between (...) the four elements. And in the last few decades of Aristotelian scholarship, it has become common either to downplay or even to eliminate prime matter’s role in elemental changes too. I will support the traditional concept of prime matter by showing that it aligns Aristotle’s view of elemental change with one of the central constraints on matter imposed in his Physics to a degree that cannot be achieved on the non-traditional interpretations: the need for matter to be in potentiality in a way that avoids the two problematic extremes of mere persistence, on the one hand, and destruction, on the other. This point will be supported by Aristotle’s rejection of both monism and pluralism in On Generation and Corruption. Second, I will argue that Aristotle calls for precisely the same kind of potentiality in a very different context: his critique of Anaxagoras’s view of matter in the Generation of Animals. Here the very same problematic extremes of mere persistence and destruction that plague the alternate views to traditional prime matter also plague the dominant views on the matter for animal generation. Especially since Aristotle takes living things to be paradigmatic substances, these comparisons suggest that the apparent idiosyncrasies of elemental transformation which have motivated interpreters to depart from traditional prime matter may not be so idiosyncratic after all. And if that is so, it may be that the problem lies not so much with traditional prime matter as with our assumptions about how persistence and constitution work in substantial change according to Aristotle. In the end, this line of argument opens the door to three new potential interpretations of the matter for substantial generation in Aristotle, interpretations which align with his concept of potentiality and – to varying degrees – with traditional prime matter as well. (shrink)

Mitochondrial replacement therapy (MRT), also called nuclear genome transfer and mitochondrial donation, is a new technique that can be used to prevent the transmission of mitochondrial DNA diseases. Apart from the United Kingdom, the first country to approve MRT in 2015, Australia became the second country with a clear regulatory path for the clinical applications of this technique in 2021. The rapidly evolving clinical landscape of MRT makes the elaboration and evaluation of the responsible use of this technology a pressing (...) matter. As jurisdictions with less strict or non-existent reproductive laws are continuing to use MRT in the clinical context, the need to address the underlying ethical issues surrounding MRT’s clinical translation is fundamental. (shrink)

Theodor W. Adornos posthum veröffentlichte Ästhetische Theorie exponiert die Krise der Kunst im Zeitalter ihrer gesellschaftlichen Integration. Gesättigt mit der Erfahrung konkreter Kunstwerke, hinterfragt sie das tradierte Kategoriensystem philosophischer Ästhetik. Der vorliegende Band unternimmt erstmals eine kommentierende Auslegung, um den dichten Text aufzuschließen und ein Weiterdenken von Adornos kritischer Ästhetik anzuregen.

Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what “return of results” means concretely, this lexicon attempts to demystify the terminology. The terms — results, return, clinical significance, and utility — are discussed. Through an analysis (...) of international and national normative guidance on this issue, the authors propose a concordance of meaning and a simplified lexicon. (shrink)

Human reproductive cloning has become the most palpable example of the globalization of science. Throughout the world, events and conjectures in the media, such as the birth and death in the United Kingdom of the cloned sheep Dolly and projects to clone human beings by Korean scientists, by members of the Canadian-based Raelian cult, and by the Italian physician Antinori in an undisclosed country, have galvanized the political will of individual countries to ban human reproductive cloning.Yet, international attempts to harmonize (...) policies in the area of biomedical ethics and human research, such as the 1997 Council of Europe’s Convention on Human Rights and Biomedicine, and most recently, the United Nations’ efforts to adopt an international convention against human reproductive cloning, have been insufficient to trigger a substantial global policy design process on issues relating to these new technologies. (shrink)

The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics, builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results (...) to participants. To identify the potential obligations, some demystification of the terminology surrounding the return of results as found in international and national norms on biobanking generally is essential. On the whole, our proposed lexicon is based on a study of norms as found in national and international policies but excludes debates found in the literature. (shrink)

Research on emotion and psychopathology has blossomed due in part to the translation of affective science theory and methods to the study of diverse disorders. This translational approach has helped the field to hone in more precisely on the nature of emotion deficits to identify antecedent causes and maintaining processes, and to develop promising new interventions. The future of emotion research in psychopathology will benefit from three inter-related areas, including an emphasis on emotion difficulties that cut across traditional diagnostic boundaries (...) (i.e., a transdiagnostic approach), the explicit linking of emotion and cognition in behavioral and neuroimaging studies in psychopathology, and continued translation of the latest conceptualizations of emotion to the study of psychopathology. (shrink)

In this paper, I respond to commentaries on my book “Are Mental Disorders Brain Disorders?”. The topics I discuss are: accounts of function and dysfunction, constraints on the relationship between processes at the level of the brain and the mind, externalism in psychiatry, implications for moral responsibility and the question whether my account is a form of conceptual engineering. I defend my account and argue that the key criterion for whether mental disorders are brain disorders is whether we can map (...) dysfunctional psychological processes onto specific differences in brain function. I also acknowledge that my commentators have identified points where my account needs further development. (shrink)

The article “Ethical Responsibilities for Companies that Process Personal Data” (McCoy et al. 2023) provides a principled and pragmatic ethical framework for companies collecting, sharing, and usin...

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, (...) it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. (shrink)

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, (...) it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. (shrink)

This book explores the way in which, working within the investigative tradition associated with the Royal Society, the philosopher John Locke (1632-1704) used ...

Human persons exist longer than a single moment in time; they persist through time. However, so far it has not been possible to make this natural and widespread assumption metaphysically comprehensible. The philosophical debate on personal identity is rather stuck in a dilemma: reductionist theories explain personal identity away, while non-reductionist theories fail to give any informative account at all. This chapter argues that this dilemma emerges from an underlying commitment, shared by both sides of in the debate, to an (...) ontology which that gives the priority to static unchanging things. The claim defended here is that the dilemma of personal identity can be overcome if we acknowledge the biological nature of human persons and switch to a process- ontological framework that takes process and change to be ontologically primary. Human persons are biological higher-order processes, rather than things, and their identity conditions can be scientifically investigated. (shrink)

Some feminist theorists have argued that emphasizing women's self-defense mistakenly emphasizes women's behavior and choices rather than male aggression as a cause of sexual violence. I argue here that such critiques of self-defense are misguided, and do not sufficiently take into account the ways in which feminist self-defense courses can constitute embodied transformations of the meanings of femininity and rape. While certainly not sufficient to counter a rape culture by themselves, self-defense courses should remain a crucial element in feminist anti-rape (...) activism. (shrink)

In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.

Volume 20, Issue 6, June 2020, Page 77-80.

Recent work in positive psychology demonstrates the importance of self-transcendence: understanding oneself to be part of something greater than the self, such as a family, community, or tradition of sacred practice. Self-transcendence is positively associated with wellbeing and a sense of meaning and purpose. Philosophers have argued that self-transcendent motivation has a central role in good character, or virtue. Positive psychologists are just now beginning to integrate the aim of developing such motivation in character interventions. In this paper we draw (...) attention to an important but overlooked condition on effectively developing self-transcendent motivation constitutive of virtue: such a process must engage the subject’s will in the right way. If a process does not meet this condition it will fail to produce motivation constitutive of virtue according to leading philosophical accounts of virtue. We identify a suite of strategies for cultivating motivations that do meet this condition but have not been explored in relation to character interventions, namely, reappraisal strategies from the extended process model of emotion regulation (EPM-ER). (shrink)